Tuesday, February 26, 2013

Paging Pollyanna, you're required in the basement

I used to share house with a woman who had a constant naiive faith that everything would turn out just fine.

"People used to call me Pollyanna," she'd say, as though it was a badge of honour. (For those of you who are too young to be familiar with the children's novel 'Pollyanna' - well, it was written in 1913- the child heroine was the sort of terminal optimist whom one might accidentally drown in a barrel, in the hope of washing the platitudes out of her mouth.)

And then my housemate would continue on her merry way, talking her way out of thoroughly well-deserved speeding fines and letting others clean up the mess when she got hammered. (Which was often.)

The speeding fines used to get right up my nose. (Well, so did the other in a more literal way, but perhaps we won't go there.) I mean, I was never able to talk my way out of a fine, even if I had a damn good reason for exceeding the limit and even though in 33 years of driving I have never- never- damaged my or anyone else's car or person by driving like an idiot.

I put my failure to escape penalty down to the pretty face and generous cleavage. No cop ever listened to what I was saying, for fear of people assuming something compromising had happened between us. Despite popular rhetoric, the cops I've known have been decent, honest and hard-working people.

Meanwhile, the modern day 'Pollyanna' would see the flashing lights in the rear vision mirror and immediately concoct some tale of cock and bull to explain why she was driving like a scalded cat- and get away with it, despite constantly managing to ding and scrape her own and other people's vehicles. The time she flew backwards out of her car park bay at about 70 kph, and turned before she cleared the concrete post. The time she backed the old ute out of the garage without looking, and ran it straight into the side of my completely virginal Subaru.

But her faith in good fortune was unscathed by these mishaps. And I thought of that today as I went in to an urgently-made appointment with Dr Goodguy, thinking cheerfully that my latest glitch would all be resolved in about half an hour. Hell, the Freeloader's turned me into Pollyanna too. I have such unshakeable optimism about my prognosis, and about my ability to get up and punch again after each setback.

I came out that half-hour later still on the canvas, and sadly disappointed.

Screw you, Pollyanna. Not everything has a happy ending.

*************************

Of course, the story began while we were still flooded in. During those ghastly days when I'd been flat on my back or playing the Game of Thrones, I'd been too sick to do my shoulder exercises without hurling. My lymph massages had gone to hell too. I thought I was just paying the penalty for that when the lump in my armpit started to appear, and so I madly thumped it and massaged it and tried to pull the liquid away from it with the flat of my hand the moment I was able to sit up without retching.

But the lump just kept getting bigger. By two nights ago I needed narcotics to get to sleep, because the pain was stretching all the way to my wrist. By yesterday the lump was approaching the size of a peach, and I was back to taking two doses of Targin a day.

I rang Miss Sunshine, who gladly talked me through the prospect of having the seroma drained by Dr Goodguy as soon as I could get to town.

"In the meantime, massage every two hours and don't do any vigorous exercise- go for the yoga-like movements instead. Slow it down."

So I did.

Nothing changed.

*********************

But yesterday afternoon I found that the water had gone down at the far end of the road, and I thought my luck had returned. It's a long way to Lismore via Casino, but it can be done. I got on the blower to Dr Goodguy, and discovered to my delight that there was a cancellation this morning.

Paging Pollyanna! It's all WIN!

Except it wasn't. Dr Goodguy looked at the offending armpit and got out the horse needle.

"This might be uncomfortable," he warned.

It wasn't. My whole armpit is as numb as a dead lab rat.

WIN, Pollyanna!

He poked and prodded in several directions, and then sighed.

"I'm afraid I'm not getting much fluid out," he informed me, showing me about half a centimetre of reddish liquid in the syringe. "I think it's gathered throughout the tissue rather than in a central location, which suggests you've got an infection."

My eyes popped.

"How can I possibly have an infection?" I spluttered. "I've been on three different courses of antibiotics over the last month, each one stronger than the last."

"But you're immunosuppressed," he explained patiently. "These things take hold so easily, and then it's really hard to get rid of them. All it would have taken is one little dot on the scar to open enough to let a germ in. I'll give you a different antibiotic, but you might well find you don't really shake this off till after you finish the chemo."

Cue shattered dreams music. Pollyanna, you're so sacked.

******************

Dr Goodguy's going to send the fluid off to be cultured, in the hope of getting a definite yes or no about the infection, but he warned me that it was entirely possible that nothing would grow even if infection was present.

"Because of the antibiotics you've already been taking, it's completely possible that we'll get a false negative."

And wrote me another damned script.

FFS.

******************

So here I am, back home and sulking. Yes, the arm feels a little better for having that small amount of fluid removed, but my shoulder is still aching like crazy. I feel much more like sour-faced Mary Lennox in The Secret Garden than bloody Pollyanna.

I don't want to be a pessimist. But honestly, the Freeloader makes it so damn hard sometimes to keep my chin up and a quip on my lips. He's good at this game. He's an expert.

Paging Pollyanna. You'd better come rescue me soon.




Sunday, February 24, 2013

Nobody expects the Spanish Inquisition

This round is proving to be even harder work than the last one. Given the escalation of side effects, and the knowledge that the poisons are building up in my body over time, shouldn't I have expected that?

Nobody expects the Spanish Inquisition.

I mean, for heaven's sake. The first type of antibiotic didn't get rid of my chest infection. Neither did the second. The third made me instantly nauseous, being one of those rotten things that has to be taken on an empty stomach, and by the end of the first course I hadn't seen much of an improvement in my cough. I even rang Dr Mellow to suggest that this regime wasn't doing the trick; you'll probably be unsurprised to hear that the message was faithfully passed on and he rang me back this time, promising to shoot me full of intravenous antibiotics at Round 5 if I wasn't 100%.

Thanks, Vi.

That was reassuring, in a way, but it didn't do much for my current predicament. I really hadn't had any respite for weeks and weeks from feeling as flat as a steamrolled cat. My exercise regime had gone to hell in a handcart, and of course that had made me mentally miserable on top of the sheer numbing lethargy in my bones. I lay completely inert in bed for so long my body was starting to ache from the inactivity. Only the thought of bed sores- bed sores? That's for grandmothers!- spurred me into momentary movement.

Getting up for any reason other than to drag myself to the bathroom? Nah. Shoulder exercises? Meh. Lymph massages? Hrmph. Now and then, half-heartedly.

And then we got flooded in, AGAIN. Another cyclonic weather system moved in from the east, dumping inches more rain and blowing down yet another huge tree near the house. Miraculously, the falling giant again missed all the buildings.

Thank the stars, it also came nowhere near the Bear this time, who watched it fall standing by my side on the veranda (yep, that got me up) instead of being engrossed in his usual caper of running around in the elements trying to do heroics.

Crazy yachtsman. But once bitten, twice wise.

And then, as the jewel in the crown, as the weekend arrived I managed to pick up a 24-hour gastric bug. Oh joy. Bring out the Iron Maiden. Seriously, there were some moments where death felt like a desirable option.

*****************

At first I was blaming the new antibiotic for how lousy I was feeling. The first chilling symptom was that on Friday night I could only get halfway through my bowl of cousin Nancy's soup. I'm telling you, nobody who starts a bowl of her soup eats half of it. 

Bloody antibiotics, I cursed, pushing the plate away.

By Saturday morning, I truly wanted to die. My stomach was in knots and I was doing laps to the dunny. In a rare moment of calm I looked up the side effects leaflet for Roxithromycin on the internet, and sure enough, there it was: vomiting and diarrhoea.

Wonderful.

And then came the moment I'd been dreading. What the chemo couldn't achieve, the antibiotic had managed- Ferdinand lost his lunch.

Violently, and immediately.

I wouldn't have believed, by the end of the day, that I had anything left in my body to deliver to the Caroma. Lord knows I hadn't eaten a thing since ignoring Ferdi's NO! and swallowing a few cautious mouthfuls of custard to grease his drying scales.

Note to self: when Ferdi says NO!, he means NO!.

But apparently inserting food is not a prerequisite. Off I staggered, over and over again, falling over dogs and stumbling on steps as I negotiated the well-worn track to the porcelain throne.

I remember thinking, at one particularly dire moment when my stomach was gripped with outrageous cramps, how fortunate I had been through all this chemo to have been completely spared the nausea. Nausea is the one thing that undoes me completely. Yes, yes, I can put on the Superwoman cloak and bluff my merry way through all sorts of side effects and symptoms with a smile on my dial- even joke about them- but attack my stomach and I lose everything. No pun intended. The sense of humour leaves first, hand in hand with my will to live. I just want it to stop.

Yep, this would be a very different blog if I didn't have a cast iron gut.

***************

The next day, when I'd at least stopped hurling and could get myself out of the throne room for long enough to do a Google search, I started looking for answers. I talked to medically-astute friends. I decided to stop the antibiotic.

Changed my mind.

Changed my mind again.

And again.

Realised I was being irrational.

Realised I needed proper medical advice- but here I was, totally stranded, on a weekend, and possibly dehydrating at a rate of knots. I realised I had no clear idea of who I should be calling for help.

Of course, in the end I called Jools, who was soon telling me persuasively that this wasn't the usual course of an intolerance reaction to an antibiotic- it was much more likely to be another infection. With my protective earth-mother friend shaking her finger down the phone at me and talking severely about rescue helicopters again, I finally found the energy to call Dr Rosie's practice. Surely there would be a weekend locum's number?

I got a recorded message telling me the opening hours and advising me to ring 000 in case of emergency.

Oh. Sorry, but it's not exactly an emergency... and anyway, ambulances can't swim.

So I tried calling the Base Hospital. Three full explanations of my plight later, I got transferred to an A & E nurse who had taken bright-and-breezy to a new level.

"Do you have a temperature?" she sparkled, after I'd explained absolutely everything for the fourth time.

"No."

"Well you're okay then. If you get a temperature, call the rescue helicopter and come in."

I could almost see the chaos that must be raging around her in the ward, inspiring her to minimise the workload if humanly possible. I got it. But it didn't help.

Mind you, I was starting to feel better, millimetre by millimetre. I'd given up my 24-hour lease on Caromaville. I'd made up some rehydration liquid to the World Health Organisation recipe, and was sipping at it alternately with watered-down pink grapefruit juice. It stayed down.

Perhaps I was on the way up again. Perhaps the nurse was right not to be alarmed.

With the rug of righteousness comprehensively removed from under my feet, I talked to Jools again, who was becoming increasingly incandescent at the other end of the line.

"You're going round and round inside your own head," she spluttered, when I volunteered that I really didn't feel as bad any more. "For fuck's sake, you've had a chest infection, a gastric infection on top of it and you're right at the bottom of your cycle for immunosuppression. You need IV antibiotics and rehydration. I think you should call the helicopter and get the fuck out of there."

I had trouble with that. I didn't feel like an emergency- not any more. I did the previous day, sure... but now my body was telling me it was coming up for air.

Jools was less than convinced. Poor woman. There she is, all the way down in Mexico (the Bear's term for anywhere 'south of the border'), trying to give informed advice to me, her dearest and oldest friend, without even being able to see me with her own eyes to make an assessment. Worrying her arse off that I'll be blase about how sick I am until I'm actually beyond help.

I can be frustrating like that. I know it. It's hard to tell when I'm 'minimising', as my other doctor-friend Frances would say, and when I'm assessing my own need accurately. That's the downside of being able to see the funny side of one's plight; it can be tricky moving back to being 100% authentic when things start to go pear-shaped.

"You need a second opinion you can trust," continued Jools, clearly frustrated by being unable to check me out in person. "Go down and see Christine and Jarvis and see what they say."

I couldn't get my mind around that. I figured that they would say they had no medical knowledge to back up any opinion they might have, because that's the sort of careful, honest people they are. But a switch finally tripped in my head.

"I'll ask Jimmy," I offered. "He's a paramedic."

Yep, all this time living across the road from Jimmy, knowing full well he'd been a paramedic back in the States, and it hadn't occurred to me in my hour of need that his experience might be relevant.

Blame it on chemo brain. If the damned TAC's going to give me this hard a time, it can pay me back a little by taking the rap for everything I do that's a bit daft.

***********************

He's a man of many talents, our Jimmy. But I'd never seen him with this particular hat on before. His professionalism- excuse me- shat all over the nurse at the Base Hospital.

Within fifteen minutes he'd assessed all the relevant vital signs and declared that I wasn't an emergency. My pulse was regular and normal, my colour was good, I was showing no signs of dehydration, the blood was returning very quickly to my extremities when pinched and released. And so on. He went down his checklist with total focus, telling me at each step what he was doing and why.

Give that man a banana. Off he went to fetch me some nasturtium leaves from his garden, as a natural antibiotic; the chronic cough he still considered a problem. Just not an emergency.

I felt like I'd been given a get-out-of-jail card.

*********************

See, I was feeling like a fraud, trying to push people to put me on a chopper and fly me out. Once I stopped feeling nauseated and wanting to die, my body started telling me very clearly that everything was going to be fine- even if it wasn't quite fine yet. With all the total crap that this poor body has had to go through since last September, the least I can do is listen when it speaks to me.

It's partly about fully owning my body, too, and being responsible for my decisions about that body. I've had to make so many hard, crucial decisions, and there are plenty more to come. How much of my left boob will I have chopped off? Will I submit to being poisoned, when it makes me terribly ill and only increases my survival chances a relatively small amount? Will I allow x-rays to flow through my body and burn me, in the hope that it'll knock off any stragglers? Hormone therapy? Genetic investigation? Rip out the ovaries? Reconstruction?

They're not easy decisions. They take it out of me. They bring me face to face with so many unpleasant realities that there's absolutely no way to hide behind half-heartedness, or to slough the decision onto someone else's shoulders. It's me who has to live with it, so it's me who has to decide.

And they're just the big questions- there are millions of little ones, too. Which tablets will I agree to take, to combat the side effects? How many is too many? Which ones do I need today? Am I ready to lift my arm higher above my head? Can I exercise today or do I need to rest more?

It goes on and on, every single day; and to answer all those questions well and safely for me, I've had to learn a deep respect for and awareness of the way my body feels.

And so when anyone, no matter how well-intentioned, tries to lean me in a direction that doesn't feel quite right today when I ask my body about it, I push back. I resist. I didn't realise that till yesterday. I have this whole new confident relationship with my body that is giving me more strength to say no sometimes, and to say yes sometimes.

I think that's a good thing.

Naturally it's not that clean-cut. Nothing ever is. Lurking behind that, there's the creeping horror I have of hypochondria. My father, heaven help him, spoke about his ailments endlessly; I can see why, given that he'd been shot through the leg in the war and was in chronic pain for decades until he discovered the miracle of acupuncture. But over time, and as dementia set in, his single issue spread and spread until every conversation was laced with horrendously over-detailed descriptions of minor symptoms that he was sure would kill him.

It drove me nuts. It defied logic. His parents had lived well into their eighties, and given that he had the constitution of a lump of granite, there was no reason to believe he wouldn't too.

In the end he died in a nursing home of a completely understandable heart attack, aged 87. The only surprise, to the nurses, was that he was found upright in the chair by his bed. Nobody had seen him relocate himself for months, and he was considered bedridden.

But they didn't know my family. Stubbornness runs deep, and we don't take death lying down.

But still, he spoke about his ailments to the day he stopped talking at all. I don't want to be like that, ever. I don't want to treat every little thing that happens to me as life-threatening, unless I actually believe it is. The cold fingers on my heart are a pretty good guide for that. I believe the cold fingers. I believe I know when I'm in danger.

But how confusing it must be for my friends. I'm all chirpiness and good humour, making wisecracks about the most dire events- and then suddenly my hand shoots up like a signal from a Bondi surfer, because I feel for a moment that I'm in danger, or I've lost my sense of direction.

They paddle out to rescue me, bless them, and the moment I'm on their board- I can breathe. I'm fine again. They're primed with adrenaline, ready to pump the water out of my lungs. They anticipate that I'll be passive, accepting, compliant- and I damn well turn around and resist treatment on the shore. I get up and walk away.

It's a wonder nobody's slapped me, really. I must be completely maddening.

But you see, I'm still learning how to ask for help, too. I'm probably not even gracious about it. It's hard- no, it's well-nigh impossible- for me to lie back and enjoy being helped unless I believe I really need it. It makes me more than twitchy; it strikes deeply at my conscience.

If my body says I'm fine now, I don't need a stretcher to casualty. I just need a ride back to shore.

***********************

Last night I mulched up Jimmy's nasturtium leaves in the blender and sprinkled them through my jacket potato; what the hell, every little bit helps. This morning my cough was much improved- barely there in fact- so who knows? Maybe the antibiotic finally kicked in. Or maybe the nasturtium was the kick in the arse I needed. I had the rest sprinkled in my soup for lunch, and I've hardly coughed at all this afternoon.

Who knows?

At any rate, it feel like the spikes of the Iron Maiden have gradually being withdrawn from my innards. The gastric symptoms are gone. Perhaps I'll get a little bit of a break this cycle after all.

And next cycle?

Perhaps I just have to expect the Spanish Inquisition, and then deal with it.

Thursday, February 14, 2013

Almost derailed

Well, today was an eye-opener.

Given that I've had such a crap time this round, and that I had that rescheduled appointment with Miss Sunshine on Tuesday, I'd arranged to have my pre-chemo blood test today at the chemo suite instead of yesterday at Sullivan Nicolaides Vampires. It saved me having three trips to town (a two-hour round trip) in three days, which sounded like good sense.

I was also aware, if the truth be told, that an extra day to recover from the chest infection gave me a better chance of being sufficiently recovered to actually have the chemo. (I am a stubborn and manipulative bitch a times. You'd better believe it.)

See, I knew that missing a session at the scheduled interval would not be good news. Dr Mellow had explained the timing of the 21-day cycle quite clearly- it's to do with new generations of cancer cells getting to their most vulnerable stage for successful and widespread attack by systemic poisoning. Miss a window, and you may miss some of the Freeloader's spores. Completely.

Not what either Dr M or I had in mind.

******************

Thanks heavens I'd decided to get there early; given my previous blood results, the staff were confident that I could just go in, get blood taken (painlessly through the port-a-cath), get set up as usual (it takes an hour as they wait for the anti-emetic to take hold), and then away we go when the test results come back in a very conveniently synchronised hour or so.

I hadn't enlightened them, when I spoke with the unit manager about all this on the phone, about my illness.

Which may have been a touch- um, overconfident perhaps? Or even self-deceptive, or (again) manipulative. Not even sure myself.

Maybe I just have an unshakable faith that things will be okay if I wish it enough, and prod events in the right direction.

I did tell them about the chest infection when I arrived, of course, but I was just looking and acting so damn well by today (thanks, Megwig, Look Good and stronger drug regime- a fine joint effort!) that Margaret wasn't too fussed. Though of course she enquired most carefully about the drugs I'd been taking, and how far through the course I was, as she took the blood. She's a consummate professional.

Anyway, what should have been a short cut turned into a marathon. It was rather like doing one of the cycling courses on the Wii, and forgetting which one I was on, and having to retrace my steps over and over to find the flags.

The first retrace was when the test results arrived back and I watched the faces fall.

"Your white cell count is over 16. Look, it's been 5, 5, 8... that's normal. And now 16? That's screaming at us that you've got an infection."

Fuck.

My face fell right through the floor then, landing in a squished-up puddle on the ground floor landing, because I was terrified that I was about to be sent home. Fortunately, Margaret was willing to seek another opinion before sending me packing.

"You look well enough for treatment, but the numbers don't lie. We'll have to ring Dr Mellow" (no, she didn't call him that of course) "and see what he thinks."

At which point I started praying to the God of All That's Fair, in whom I so passionately don't believe.

****************

Somewhere along the way, a second test on my ruby red fluid was ordered. Another lengthy wait ensued. Nobody was willing to hook me up to the saline yet; wait and see.

The minute hand crawled round.

Thank the lord for my wonderful cousin, who kept my mind off the anxiety as we reminisced about our childhood holidays at our grandparents' country property.

My grandfather making a huge pot of rolled oats, enough for all the humans- with the exception of my brother and I, who wouldn't touch chook food like that with a bargepole and reached instead for the home made blackberry jam and cream from the house cow on white bread from the local bakery (can't imagine how my hips got this size). Somehow there was always plenty of porridge left over for each beloved cat to have a bowl. 

Trips to the creek to go yabbying, to learn how to pan for gold from my amateur-geologist father, to build dams in the sand (me) or to dare hot-footing it over the large pipe strung perilously high across the creek (Nancy, who copped seven bells of hell for the feat when my aunt found out). 

Laughing, I reminded her of our unscheduled excursion out the front gate (it was, believe me, a long driveway) and up Mount Mutton on the memorable Christmas Day when every last one of the adults fell asleep after lunch. The seven bells of hell my brother (the oldest of us all, and expected to know better) had similarly copped for that.

She couldn't remember it.

I realised, counting carefully back over the years, that she probably wasn't even born yet. Damn, she's so young.

(She begged to differ, but that baby isn't even fifty yet.)

*****************

Eventually the second test came back with better results. There were relieved faces all over; perhaps Margaret had sensed an argument brewing if she'd tried to turf me out. Or maybe she just really wanted me to succeed.

Probably the latter. She's a good, kind woman.

So having arrived a good hour early, I got started on the chemo a good hour late. Add the hour's driving each way, and it was, um, a bloody long day.

*****************

Dr Mellow turned up during his lunch break, checking on another patient having a few issues before eyeballing me briefly from the other side of the counter with a slightly confused expression (who is that woman? Is it Meg Ryan?) and issuing strict instructions that I was to take the rest of my course of antibiotics religiously, followed by the full repeat, and get myself another blood test next week to see what the hell was happening then.

Yes, sir.

So I am on a good behaviour bond, and I've had something of a reality check. (Probably not a moment too soon.) I will be taking it easy a little longer yet, and checking my pill pack with OCD fervour till the ten day double-course is done.

Sigh. This is going to be boring. Thank god Nancy brought me a new supply of books.

*******************

Oh, and Ferdinand is already in residence. Double-sigh. He's promised to keep me busy greasing his scales.

Boredom, schmoredom, he grins. Happy Valentine's Day, Candy. How do I love thee? Let me count the ways. And then allow me to  send you to the kitchen every two hours or so throughout the night to fetch me choice morsels, alternating on the hour with your saline-packed bladder sending you out the veranda door, where you'll need the Bear's brush hook to cut through the ravaging hordes of mossies to find the bathroom. You won't have time to be bored.

I had to get the bloody high-maintenance fish with the warped sense of humour, didn't I.

Tuesday, February 12, 2013

Fake it till you make it

There's no doubt that the Megwig has a positive effect on my spirits.

Take today, for example. I had to drag myself out of bed for a late morning appointment with Miss Sunshine, the lymphoedema physio, after a less than peaceful night.

I'm actually exaggerating in the wrong direction there. 'Less than peaceful' is Candy-speak for 'life-threateningly terrifying'. In the middle of last night I was quite convinced, for about five seconds, that I was dying. The new, stronger antibiotics that Dr Rosie prescribed after straight Amoxicillin failed to knock over my chest infection have had the delightful side effect of making me severely nauseous (ME! Me who never gets nauseous, even on TAC chemo!), and sometime during the night my body rebelled. While I was fast asleep I actually managed to aspirate a little, um, regurgitated stomach contents.

That, gentle reader, is not a nice sensation. Imagine choking on, say, hydrochloric acid. (Not that I ever have, but it's what my imagination came up with as an equivalent.)

I couldn't breathe. At. All.

And then somehow I managed to gasp, and sit up. And coughed my lungs out for half an hour without stopping, to the point where I came damn close to actually losing the rest of my stomach contents. Yes, Ferdinand nearly saw the light of day.

(Or of night, rather.)

The Bear was seriously alarmed. Dammit, I was seriously alarmed. It took some considerable time for us both to go back to sleep.

So it wasn't exactly a restful night. But we fake it till we make it, don't we? Otherwise we're letting the fucking Freeloader win.

I dragged myself to the shower, did my %^#@!!## massages, grumpily got dressed, put on my Look Good face (which doesn't look so 'Good' when superimposed on a snarl).

Meh. Waiting for the Feel Better, guys. 

Wai- ting.

Topped it with the Megwig.

Grinned.

That doesn't look half bad.

Ate half a gallon of prophylactic yoghurt (that may possibly be an exaggeration too) with the next antibiotic.

Die, you horrible chest infection. I need my next treatment. 

Dr Rosie is a great believer in probiotics- the more yoghurt the merrier, in her books. I hoped it'd work on the nausea as well as the calcium tablets had for the bone pain.

And off I went, faking it all the way, to the other side of Lismore.

***************

Miss Sunshine, shining as ever, declared that I looked like a movie star; I restrained myself from pointing out which one, but it helped keep the smile on my face. It's been hard to keep smiling this time round. What with the chest infection and now the horrible antibiotics, I really haven't had any respite from feeling disgusting.

But back to Miss S. It's months since I saw her last, thanks to the Christmas holidays and the floods, and so she inspected my hand and arm with some concern.

Proclaimed that I was looking good to her, but hooked me up to the weirdo machine for an accurate measurement.

"Hmm. It says 6, but you don't look like a 6 to me."

With a little further inspection she found the guilty party- a little pool of oedema under my left arm. I'd noticed the hard lump there in the middle of the night while I was vainly trying to go back to sleep, and had spent some time poking and prodding it myself to try to determine whether it was oedema or the sudden and aggressive return of the Freeloader.

(Hardly likely, seeing there was no lump there four days ago when I saw Dr Goodguy, but at 3am logic doesn't get a guernsey.)

So after some more massage and a concerted effort at the site of the swelling, she tested me again.

Grinned.

"That's good. That's very good," she declared. "I didn't think you looked like a 6."

"What's it reading?" I enquired.

"2," she chortled.

Which is actually way better than the reading she did before I had my lymph nodes removed, and nearly 2 points down on my last reading.

I'm a star! And I don't mean Meg Ryan, for once.

******************

After that she went on to some more general body work, trying to encourage various remote lymph nodes to take over the work of the ones that were unceremoniously sacked last year. Like any employee suddenly asked to cover others' workloads as well as their own, they need some fringe benefits to feel like working harder, which is why I have to do daily massages on my neck, right armpit and groin.

I mean, you'd work harder if you got a free massage every day, wouldn't you?

"Did I do the abdominal breathing with you yet?" she asked, flicking through her notes.

"No," I replied, "but I think I know how to do that, given that I'm a singer."

"Really? Do singers use that too?"

"Yes, you don't have any breath control if you breathe from the top of your lungs."

And off we went, with Miss Sunshine pressing down on the nodes around my pelvic area while I pressed up with each abdominal breath.

"I wish everyone could do this like that," grinned Miss S. "You're definitely my best patient. How do you teach singers to do that?"

Well, that was an opening and a half. Talk about letting the child loose in the lolly shop. In an instant I was off and away on my hobby horse, teaching her a few of the tricks of the choir mistress' trade.

I could see Miss S. taking mental notes as I raved on.

"That's brilliant. I'll use that," she enthused from time to time.

As I drew the lecture to a close, I had a sudden blinding memory of the labour ward, where my superior singer's control of my diaphragm had definitely contributed to my ability to push a baby with head the size of a watermelon out of a passage the size of a Pringles tube. The attending nurse had been somewhat less cognisant of my skills than the glorious Miss S.

"Put your chin on your chest to push!" she'd barked, over and over again, while I'd sworn at her in my head (one is, by that stage, completely struck dumb by the agony) and moved the poor child another painful centimetre towards the light.

"Leave her alone," frowned the obstetrician eventually, somewhat the wiser given that he'd actually been observing my son's progress rather than adhering blindly to some god-forsaken nursing textbook. "She's doing fine."

(Which was his sole positive contribution to the success of my childbearing experience; but I digress.)

So I noted down another random advantage of my singing experience on my mental list. Deliver babies; massage lymph nodes.

Weird.

****************

We talked about the impending radiotherapy, too. I am a total bore on that subject at the moment, beating all my care team mercilessly into the ground with questions. Miss Sunshine seemed confident that even if the current lymph channels near my left armpit get fried, she'll be able to help me redirect the flow.

"And I can always give you one of these light bandages to help," she smiled, bringing out the dreaded shoulder-to-elbow boa constrictor.

I cringed. I so don't want to have to wear one of those. I am dreadfully claustrophobic, just for starters. I don't even like wearing tight socks. The thought of having my arm swallowed by an unforgiving reptilian predator like that brings me out in a sweat.

Not to mention how hot it would be in our lovely, humid Bungy summer.

Just another thing to deal with when I come to it.

***************

We figured that my higher reading when I came in was probably also about me driving for over an hour to get there in a 2WDAC car. (That's 'two windows down air con', in case you were wondering; air con is an optional extra on the 1992 Brumby, and mine struck out.) I'd told her about how my arm started to swell and dimple after a week of 40 degree temperatures out in the Bungy, and she'd nodded approvingly at Lucy the Lump's frozen tea towel remedy.

"Perfect," she declared. "You have to try to keep the arm cool any way you can."

I remembered that when I got home after another steamy drive, and whacked the tea towel back on it. And then ripped off the Megwig and put the still-chilly tea towel on my head.

It's hot work being a hot blonde. And once I get home, I can stop faking it. I already made it to the best of my ability, including a dreadful stagger around the supermarket with my stomach in knots of cramp.

Now I can just lie here on the bed and die slowly of antibiotic-induced nausea. Yep, the yoghurt worked for a while, but eating lunch was clearly a bridge too far.

Oh yeah, that's right. I have Maxolon for just such an event. Remember to medicate, Candy!

And maybe it's time to try the other half gallon of yoghurt, though Ferdinand is protesting strongly.

Such an annoying fish.

Shut UP, Ferdi. It'll make you feel better. Just do it. Fake it till you make it.  

Maybe Ferdi needs a Meg Ryan wig too.





Friday, February 8, 2013

On being a hot blonde

I bought the wig.

It was the least I could do, really. I'm feeling bad for not keeping on top of events; it took me till this morning to realise that tomorrow isn't just the Bear's birthday- it's one of those big ones, the ones with a zero.

And for this, I have done precisely nothing. Thanks, Freeloader.

It's the second Big Day that the Freeloader's comprehensively screwed up. It was my brother's 60th last October, and he was meant to be coming up here to celebrate (another excuse to cook- woohoo!), but his visit was hastily cancelled when I was diagnosed. I wasn't exactly coping or feeling festive at that stage.

You only get one go at a 60th. It really isn't fair.

But we knew that, didn't we? "Fair?" I remember one of my old teachers saying long ago, in a tone that encompassed both wonder and contempt. "When did I ever pretend to you that life was fair?"

So in the absence of fairness, a party, a present or anything approaching a celebration, at least I can put on the blonde wig and make the Bear's eyes twinkle. They certainly lit up in Shartan today when Keryn put the wig on me, and they'd just about burned a hole in my profile by the time we got home.

**********************

So I have been reincarnated as a 'hot blonde', to quote the Bear himself. Mind you, this business of being 'hot' has turned out a little more literal than I'd planned, given that I spent last night obsessively taking my temperature as it roamed all the way to 38.1 degrees before deciding to behave and be reasonable.

Yep, it's not just that the poisons have built up in my body. I've not just been feeling like warmed-over crap for the last two weeks because chemo gets worse as you get further into it. No, I actually was sick, but I didn't realise it. I blamed the Freeloader for everything.

As you do.

The dreadful sore throat, the hacking productive cough, the absolute exhaustion, the aching muscles- hello, you have the flu. Don't you recognise those symptoms, you numpty?

Um, no. I just assumed it was more side effects.

It took me till halfway through last week to wake up and get myself to the doctor, by which time I was wheezing and spluttering like a blocked sewer pipe and contemplating pulling out the Ventolin.

Or a plunger maybe.

Dr Rosie took one look at the back of my throat, listened to my raspy chest and started writing the script for antibiotics.

"You know," she said patiently, "it would have been quite alright to call for a helicopter when you had these symptoms while you were flooded in. You're immunosuppressed and you have a chest infection. It's okay to call for the SES to help you- that's what they do. Sure, you made it and you're okay now, but you might not have been."

Sigh. Old habits die hard. What was that I said about being a squeaky wheel?

Not one of my strengths.

**********************

I told Dr Rosie about weeing every hour on the hour for about four days, too, and about how Jools was worried about my sugars.

"Well given that you've stopped doing that, if I take your sugars now it won't give us much idea what was happening back then," she noted. "I'll write you a form to take to your next blood test. There's a retrospective test they can do to see if your sugars have been up in the last month or so- if they have, there'll be some sugar still stuck to your red blood cells."

More paperwork. I popped it in my bag with the script for Amoxicillin.

"Would it be because of the Dexamethasone?" I asked. "Because I'm wondering if I've been taking too much. I'm getting awfully confused with all these different tablets- can I just run them all past you?"

And I emptied my bag of about eight simultaneous medications onto the desk. (I didn't have the other three that come at the start of the cycle.)

Gentle reader, there's a hole in the holistic bucket when it comes to cancer treatment. You have all these different doctors prescribing for the problems that their treatments cause, but they're not talking to one another. And the poor confused patient ends up with a lolly shop full of pills, trying to do this mental jigsaw puzzle of what, when, how much and what with. Every bloody day.

And that is no joke when you have chemo brain to boot.

So god bless Dr Rosie, yet again. We sat there and sorted out the drug regime with all the pills there in front of us. And yes, I had been taking too much Dexamethasone. You see, day 1 of the Dex is day 0 of the chemo cycle, so when Dr Mellow said to extend taking it to day 4 and taper it to prevent the bone pain... he almost certainly meant day 3 of the chemo cycle, and day 4 of the Dex treatment.

Is your head spinning yet? You think you've got problems understanding? You haven't been systematically poisoned. Imagine what it's like for the patient. In short, I'd taken about four more of the damn things than I should. No wonder I was leaking like a punctured downpipe in a cyclone.

And Dexamethasone- well, that's the thing that sent the Bear's last partner into a diabetic coma. Talking about tramping on thin ice.

Anyway, to quote Pooh Bear, supposing it didn't; I didn't go into a coma, and even if I had high sugars back then, they must have settled down.

I won't be overdosing on the Dex again, believe me.

******************

Dr Goodguy, on the other hand, was nothing but pleased with me at our three-monthly checkup this morning. My scar has healed up just fine, my shoulder movement is great, there's no sign of anything untoward happening in the other boob and he doesn't want to see me for another six months.

We chatted a bit about the radiotherapy, and he was pretty strongly in favour of radiating my armpit. (Dammit. But really, I've decided to do it anyway.)

"Look, you're in the grey area," he explained. "If you had only five or so positive lymph nodes, I'd say definitely no. If they were nearly all positive, I'd say definitely yes. You're in the middle. But my feeling is, do it. We can manage any lymphoedema if and when it happens..."

I filled in the missing clause in the silence: ...better than we can manage a recurrence of the cancer.

Yeah, okay. I get it.

*******************

We talked about reconstruction, too. He gave me some pamphlets, a DVD and the bad news.

"I'd definitely recommend flap surgery over implants after radiotherapy, and also for someone with a larger breast size like you. The chance of complications with the implants after radiotherapy are just too high."

Bugger.

"So flap surgery- when would you do that, and where would you take the flap from?"

"Oh, I don't do that. I'd have to send you off to someone who specialises in it. It's not one of my areas of expertise, and I don't dabble. I do things properly or not at all."

The sound of my bottom lip hitting the floor was probably audible.

Double bugger. In fact, triple fucking bugger.

I don't want anyone else messing with my breasts. I want Dr Goodguy- and not just because he doesn't charge a gap, either. It's because I know how bloody skilful he is.

I tried to recover my composure. "So where would you send me?"

"The Gold Coast, or a capital city."

Hmm.

"My son's in Sydney."

"That's definitely an option."

And then we went back to let's worry about that when we come to it, let's get through the radiotherapy first, etc etc. But I'm still a bit shattered.

****************

So the hot blonde will have to (a) wait six to twelve months after radiotherapy finishes and (b) travel to the big smoke to get her cleavage back. I guess the wait justifies the cost of the prosthesis, anyway; let's think positive.

And as the Bear pointed out in the car as we drove home, "I can't imagine he'd refer you to an idiot."

Point taken, Bear.

*****************

So that's about all the news from this hot blonde for today, though I probably should show you my hot fingernails. Red hot.


I guess it's the Doxorubicin that's made them look like this. For some reason my nails aren't doing any of the things they told me would happen- I don't have ridges across them, one for each treatment, and they're certainly not turning black or threatening to split or fall off.

Yet. Touch wood.

If the truth be told, it's probably the best my fingernails have ever looked (if you discount the red stripe). Just think- I could be transformed into some sort of fashion plate by the end of this, sitting around all day in my blonde wig moisturising and making up my face, exercising faithfully each morning, massaging my arms to keep my skin supple and smooth, rubbing cuticle cream into my fingertips, painting my nails...

...as my brother would say, "squadron of pigs cleared for take-off."





Friday, February 1, 2013

I'll have what she's having

The trouble with this goddamned Freeloader is he keeps shifting the goalposts.

Of course, people warned me that the whole chemotherapy thing would be a moveable feast- that I'd feel different during different cycles. Probably worse, as the poisons built up in my body. That's completely logical; the more damage the chemicals do to the stray cancer cells as time goes on, the more collateral damage there is to the normal cells.

I didn't want to hear it, of course. I have some sort of unquenchably naiive belief that if I gather enough information about my body's reactions and analyse it obsessively, the Freeloader will stay between the lines of 'what I know' and I'll be prepared for anything he throws at me.

Wrong, wrong, wrong. Dammit.

I mean, it'd be so handy if he'd just stay still. Then people could read my blog and know what to expect from this sort of chemo, couldn't they? And that would be really useful. I'd feel like I was doing a proper community service. You know, "If you have what I'm having, this is what will happen."

It doesn't work like that.

****************

This time round I've been as sick as a dead dog, all the way from Day 3 to Day 9. I'm talking lie-in-bed, what-bike, fuck-the-Wii sick. I'm talking who-cares-if-I-get-lymphoedema, couldn't-be-bothered-with-mouthwashes, all-bets-are-off sick.

I'm talking wobbly legs that would barely take me to the bathroom, a bladder that screamed for relief every hour on the hour day and night, intestines that changed their mind about how to torment me four or five times a day so that regulating them was impossible, and a brain that was so trashed I could barely make my mouth form words (let alone entertain myself while I waited for the express train to finish running me over). I'm talking a hideously sore throat that had me taking my temperature every few hours, a hacking cough and a mouth that felt like it belonged to a cadaver. There I was on Day 9, when I usually start to feel human, still unable to taste a bloody thing or swallow anything at all without pain in my throat. Not even water.

Yep, it's been a tough one.

*******************

Just to add to the joy, in the middle of all that along came Cyclone Oswald bearing 250mm of rain in 48 hours (that's TEN INCHES!? WTF) and insane wind gusts that threatened to blow the trees right out of the sodden ground. By the time the Bureau of Meteorology issued their major flood warning for our area, the creek had risen so violently that we'd already been cut off at both ends of the road for hours.

(Hello, BoM, a warning means you told us in advance.)

We joke that this area should be called the Bungawalbin Archipelago. Once the floods hit, the road becomes a chain of non-navigable islands in a treacherous sea of forest; if you're not prepared, you're in deep doodoo. I thanked the gods that I'd done a major shop before my chemo session, leaving us well-placed to sit it out- if you discount the fact that one of us happened to be dangerously immunosuppressed and was showing a few rather worrying symptoms.

From the other side of the border, Jools fretted over the frequency of my trips to the loo, worried that the Dexamethasone had pushed my sugars up to dangerous levels. The Bear listened to the barking cough and nudged the thermometer in my direction every few hours, his eyes darkening.

So here we sat, the miserable chemo-blob and the Bear with a toxic case of cabin fever, for days. Trapped, and stressing out. Oh, it was such fun. Especially when the sun came out over all that standing water and the humidity rose to Stupid Per Cent. Especially when we woke on the second morning of being marooned to discover that one of our alpacas had decided the drama was all too much for her and shuffled off her mortal coil for no apparent reason.

You try disposing of a fully grown, sopping wet and extremely dead alpaca on your own, in a wetland, in 35 degree heat after ten inches of rain. The Bear managed it, though by the time he'd finished his eyes resembled antimatter; I stayed well away from him, as being sucked into a black hole isn't the way I want to go.

It takes a certain type of tough to survive in the Bungy- we all know that. Especially when you've run out of beer. And damn, we are tough. When we finally escaped from the far end of the road yesterday and got out to town the long way, nobody had starved to death or had their eyes poked out with a fork.

But it was a near thing now and then.

******************

While we were flooded in I was cursing myself for forgetting to buy the blue cheese. When you can taste hardly anything that you like, it's easy to get a little obsessed by any food that's the tiniest bit enjoyable; strong cheeses have always been one of my guilty passions, and when I discovered I could actually taste the blue cheese gnocchi at Cafe Cappello my head was spinning with pleasure.

I am such a hopeless food junkie.

Trying to recreate the flavour of blue cheese armed only with cheddar, parmesan and paprika kept my mind off the thought that I might have to call for a medical evacuation if the sore throat and cough developed into a fever. As I choked down disappointing hunks of rarebit on soft white bread, I contemplated instead the thought that I was barely halfway through the black tunnel of chemo.

How much worse could it get, FFS? Was I going to end up unable to swallow at all? It really felt like the entire lining of my throat had sloughed off, leaving a red-raw tube choked with a slurry of dead tissue.

The threatening fever never developed, and by Day 10 my bladder did finally stop behaving like a leaky pool liner. I think I was just suffering from an overload of dead cells in my mouth and a cumulative case of fluid retention on my hips thanks to the Dexamethasone, but there were some anxious moments there.

No helicopter ride for me. I tried not to be disappointed.

*****************

I'd thought that booking in to a 'Look Good, Feel Better' workshop on Day 9 of my treatment cycle was a safe bet, but that was before the Freeloader started redesigning the playing field again with help from Uncle Oswald. On Thursday I was ready to cancel, but when Friday dawned we found we could get to Lismore the long way round if we really wanted to- and I felt marginally less ratshit.

So I got up.

I showered, and dressed, and choked something down the red-raw tube.

That was about enough exertion for one day. I was ready to head straight back to bed.

GO, Candy.

So I did, even though I felt like crap. Even though I knew it would take an hour and half to get there. Even though I knew the Bear would have to twiddle his thumbs for another two and a half hours while he waited for me.

It sounds like a stupid decision, but it turned out to be a smart one.

***********************

Ladies, if you ever get cancer and you land an invitation to one of these workshops, GO. No question about it. GO. I don't care if, like me, you've never fussed over makeup in your life and all the signs seem against it. Just do it.

Honestly, because I've been lucky with my natural looks- good skin, regular features, strong colouring- I never paid any attention at all to the whole beauty routine thing. I just winged it from the start. And even after all the information and luscious product I was supplied with at the workshop, the truth is that I'll probably just go on winging it till the day I die. But that's not actually the point.

Eyeshadow? ME? You're kidding...
The point is that it takes you out of your sick self, that all-consuming monster that's been eating your life, and puts you in a place where you're focussing on something else- something a little self-indulgent, and rather fun. You get led into this little self-care routine that feels very pleasant- and sensory pleasures are just so few and far between when you have cancer. The touch of gentle fingers patting and stroking your face... lotions that cool, lotions that slip smoothly under your fingers... it's lush.

We need lush. We need it desperately.

The finished result
And then the make-up- well, I guess it's a bit of art therapy. A few magic tricks to hide the faults... blotches that vanish, eyebrows that reappear... so many women were totally transformed in front of my eyes yesterday.

Little old ladies, greyed and beaten when they arrived, were turned into elegant women who may have just walked out of a Double Bay deli. Exhausted-looking younger women took on life and vibrancy by the time they departed.

It was, truly, magical. I went in with plenty of preconceptions about women who devote hours to their appearance every day, I can tell you- I mean hell, what sort of a life is that? Surely we should be caring for others and contributing to the world, not primping in front of a mirror for half the day. What the hell does that achieve?

Ah, but not when you're this sick- all bets are off when you're this sick. It's not really about vanity, or about self-indulgence. It's about feeling empowered, about getting up off the mat where the Freeloader's thrown you and saying "I refuse to look beaten". It's about saying "I'm still worth something- I still deserve some pleasure."

There were woman there yesterday who know the Freeloader will beat them. They know their treatment is just stalling his ultimate victory. But when they left, you couldn't tell which ones they were, because on this particular day they were winning.

*****************

By the time we got to the wigs, I was feeling chirpy enough to agree to be the model. Sure, I might have staggered a little when I stood up, but motivation got me to the chair.

There was a lot of laughter happening by then. For example, we'd agreed to a new law banning magnifying mirrors; expect legislation to come down any day soon. (There's an election coming, right?) And when Amanda reminded us that opening a hot oven with a synthetic wig on was likely to leave us with a frizzy perm- bzzzt!- it only added to the giggles.

In this spirit of good humour, I agreed to test-drive a variety of wigs. What the hell, I'd already had my meltdown in Shartan months ago. I was over it.

The redhead look drew some appreciative gasps. Yes, I guess I actually looked like that once, when I was about 30... I was quite comfortable looking at myself in that one, while Amanda explained how to ensure that one's locks didn't blow off in a strong wind.

Perhaps the colour was, um, a little strong for my age. All very well when I'm made up to the gills...

Then there was the streaky, light brown look- much more like my usual colour these days. A flattering tone, but I felt a bit like there was an echidna on my head again. Amanda showed us how we could fiddle with the wig for slightly different looks, tucking strands behind our ears or fluffing the fringe this way or that.

"Please don't take to it with the scissors," she reminded us gently. "If it needs a trim, bring it in to us. The thing about a wig is it doesn't grow back."

Cackles from the crowd.

And then out of sheer mischief, I decided to try being blonde. Just for a laugh, you know. I am SO not a blonde- never even wanted to be, not for a moment. But one of the other ladies had tried on a blonde fringe, to the hearty cheers of the audience, so I felt a little entertainment was to be had.

Oh my, didn't that just open a can of worms. I looked in the mirror with my cute little blonde shag cut, and saw Meg Ryan looking out at me. Seriously, I felt I should be grasping the edge of the table and moaning. I totally got the giggles.

That's why the cheeky look in the photo to the left- I was waiting for someone to say "I'll have what she's having..."


The longer I looked at that damned wig, the more I realised it was actually a serious proposition. Hell, I couldn't stop laughing while I had it on, so that had to be good. If I have to look at a different me in the mirror till this is over, why not a totally different me?

*****************

By the time the session was over, Ferdinand was starting to protest. The little sandwiches provided at the workshop had proved too much of a challenge for my poor mouth; I'd barely been able to swallow a mouthful. But it was a long road home, with plenty more chores to complete before we headed back into the back of beyond, so I shut up and put up till we'd fed Centrelink a new medical certificate (doesn't that sound simple? I'll leave you to guess how long it took) and done a raid on the supermarket.

What fool I am sometimes.

When the fish is hungry, you feed the fish. By the time the Bear dropped me off by the roadside in Casino to find something soft and palatable (and I'm telling you, in Casino that's a serious challenge), I was beyond good sense. Still channelling Meg, I watched the man in front of me at the greasy spoon order chips and gravy. Mmm, potato! crowed Ferdinand. Still tastes like potato! Mmm, gravy! Soft and slippery! I'll have what he's having!

Gentle reader, when you're having chemotherapy it knocks out random taste buds. In my case, I've noticed that one of the things I simply can't taste at all is salt. If I'd been less ravenously hungry, I might have engaged my brain and realised that the gravy powder they use in fast food outlets is basically composed of three things: food colouring, stock powder and salt.

In the other order.

I mean, I actually worked in a fast food store for all of four days once, until the guy in charge decided that my adherence to good hygiene practices constituted dereliction of duty. "You're too slow," he leered as he sacked me, one greasy palm planted on the sandwich he'd whipped from under my gloved hands and which he was now hastily cutting for the stoned fruitpicker at the counter, who wouldn't have blinked if his sandwich arrived tomorrow by elephant.

But I digress. I tasted that despicable gravy when I had to make it for Mr Greasy. It was outrageous. And here I was, dipping floppy strips of fried Sebago in it and wolfing them down as though this humble condiment was the nectar of the gods.

Let me remind you: I couldn't taste the salt.

It wasn't until I was down to the last couple of floury wads of potato that my mouth started to feel even more strange. It was as though the Sahara and the Gobi had called a party on the insides of my cheeks. On my tongue, my resident budgie was rolling around creating a grit-fest reminiscent of a sandstorm on the Nullabor.

I mean, imagine if you emptied a whole sachet of Macca's salt onto your tongue and just left it there for five minutes or so. (My son did that once when he was a kid, for a dare. I'm not sure he thought it was worth the dollar he won as a result.)

It was dire, and it wasn't going away. I'd just managed to poison myself a little bit more, out of sheer stupidity.

Thanks for that, Ferdinand. By the time we got home I was gasping for water and realising that I'd probably just condemned myself to yet another night of getting up every hour to wee. I was on the sixth glass before I started to feel any relief, and it took two more cupfuls till Ferdi threatened to float up out of his tank and I decided I'd better stop while I was ahead.

Meanwhile Amanda had posted her pictures of the workshop to my Facebook, and I showed the Bear the shots of Meg.

I swear he started to slobber.

"You look horny," he declared.

I collapsed into giggles yet again. All that crap about blondes having more fun, gentlemen prefer blondes, blah blah blah? Maybe there's something in it after all. The rest of the evening passed in a haze of blonde jokes, one-liners from When Harry Met Sally and cheekily raised eyebrows.

Dammit, I think I'm going to have to buy that wig.